Monthly Archives: July 2009

After the thrilling surprise of the power chair on Monday, I thought that would assuredly top the list of This Week’s Highlights. Well, perhaps it’s still tied for the lead, but there weren’t any dull moments this week.

On Friday morning I awoke looking forward to digging into our last big box project, hoping to finally reclaim our living room from the Public Storage brown cardboard decor we had going on. Kyle awoke, with a terribly swollen throat, and changed those plans.

After seeing the doctor, we went to the lab for bloodwork. I waited just outside the lab door, by the elevator. I smiled when I saw him coming, looking rather pale. He said, “Oh, Mom, I don’t feel so good” and gave me a hug. I love it when my big boys do that. Then, it became a really big hug. “Oh…he is so sweet!!!” I thought. Whoops…wait a minute, he wasn’t showing me affection, he was passing out in my arms. Cold. I couldn’t hold him up, but managed to break his fall to the floor. So, there he lay, completely out, right in front of the elevators. The poor folks trying to get off were quite shocked when the doors opened.

The hospital’s rapid response team arrived very quickly, just as Kyle began to come around. A wheelchair ride to the ER, a wide-open IV of fluids and some steroids had Kyle feeling much better by the time we got the diagnosis: mononucleosis. Ugh. His pediatrician had suspected this, and warned that if he did have it she wouldn’t clear him to play contact sports for three months, because of swelling in his spleen. There goes this year’s water polo season!

He’s been utterly miserable and in great pain. His throat is so swollen that eating solids is completely out, while even drinking is difficult. We would so appreciate your prayers for his comfort and healing!

On the upside, we met another of the cadre of wheelchair technician angels yesterday. Pete brought the new stroller that we had ordered and anxiously anticipated. During months of googling “reclining wheelchair” I found an amazing chair that has all the features I wanted. But there was more…it has an innovative design that may help Abbie’s posture, muscle tone, and ability to work with her hands.

Here’s our new “Thevo Twist”

One special feature is has is flexible lateral supports — those black things sticking out midway up her seat. In normal wheelchairs that is exactly what they do…stick straight out to help keep the child sitting straight. But, often they end up getting is the way of the arms, and not being a good fit. These ones, while retaining some rigidity, wrap around Abbie’s midsection and buckle together. What a difference this has made in keeping her back straight! And, after 5 years we finally have a head rest that works and keeps her head aligned with her body — woo-hoo!

It reclines all the way back, and has already proven a GREAT place to change Abbie without having to transfer her. This means we can always keep her clean and comfortable no matter where we are at; important now that she has outgrown the changing stations in public restrooms.

This is what is so different about it:

The back of the chair is not solid, but is constructed of rows of these sensors. When Abbie’s body moves, these respond, giving her input that helps her know where her body is in space. This specific type of input has always been very helpful to Abbie, and leads to her sitting up straighter, having more head control, and relaxing and moving more fluidly. The suspension on the stroller is also adjustable. With the pull of a pin, the shock system is locked, so that the Abbie will feel every bump and jiggle…leading to even more sensory input for her. I had high hopes for this stroller, and now, actually having it here with Abbie, it has far exceeded them.

We purchased a new car seat from the same company. It is very adjustable and supportive, but the coolest part is that it has an iPod plug at at the bottom of the seat that feeds to speakers situated within the head rest. I plugged my iPod into the seat and let Abbie listen. This is her response:

We purchased both of these items from a company called “Exomotion” www.exomotion.com. They are the only American importer for these, produced by Thomashilfen in Germany. Exomotion is located in Seattle, and I cannot say enough about their terrific customer service. If you have a child who may be in need of a new chair in the near future, I urge you to check out what they have. Getting this chair has been life-changing, and I know other wheelchair families will recognize that statement is not hyperbole.

As this week comes to a close, I just feel very, very blessed. I pray as you reflect on your life, that same sense comes over you!

A lot has happened since the last post. Our “moving without moving” project has come quite a long way, as every closet, drawer, and shelf have been emptied and sorted through, while every piece of furniture we own has been moved to make way for the painters and carpeters. In the midst of this we had a slight complication, when a minor cut on Ray’s finger became infected with MRSA and his hand swelled up like a softball. Part of the effort to keep him out of the hospital required him to constantly elevate that hand. This prevented him from helping much with the house projects, but, even worse, made him the victim of 12-year-old humor.

You know the kind: slightly funny, mostly annoying, relentless. “Dad, do you have a question?” “Excuse me sir, can I help with something?” Poor Dad just wanted to bring his hand down, if for no other reason than to cover the twins’ mouths! They couldn’t just say it once, or even three times. Oh no, they were certain it would finally make us laugh at repetition number fifty!

Ray did manage to avoid the hospital so that we could meet Chase in Santa Clara on Thursday for his college orientation. I have not been on that campus since I graduated. It was nice then, it is beautiful now! I wanted to ask whether they accept moms for a second go ’round. It was a blessed time as we learned where, how, and with whom Chase will be spending the next four years growing into a godly man.

We arrived home on Saturday to find our anxiously awaiting princess looking beautiful. Genevieve said she was sad while we were away, but the day she knew we were coming home she jumped at every sound, even from a dead sleep, looking for us.

Today, I learned that some angels wear green and drive big vans. One is named Derrick. This particular angel, a wheelchair technician, has been conspiring with Abbie’s therapists for well over a year about how to get her into a power wheel chair. Today, we were blessed with the results of their behind-the-scenes planning. I had expected a wheelchair like she has now with a motor under it, not knowing that we would be speed warping into High Tech Land.

The power chair looks NOTHING like what she has now. It sits on a base that reminds me of the scooter chairs you see seniors zipping around in, although Abbie’s chair has two front wheels. We seated her in it, and she fit very well. She was then able to use the toggle switch to control the chair: elevating her seat way up in the air — to a position that will allow us to seat her without bending over, what a blessing for our backs! She could then move it all the way back down. She also learned how to recline the chair (it went wwwaaayyyyy back) and then incline it again. It took her a little while, and a change of the type of switch, for her to really get the hang of it, but she definitely conquered the recline move by the end of therapy today! Eventually, she will be able to use the switch to drive the chair around — although I did ask about remote control brakes!

We will be working on the switch access at OT on Wednesday, and then perhaps we can bring the chair home. I am stunned by how remarkable a piece of equipment it is, and so overwhelmed that all of this planning went on without my even knowing it. Much of a special needs mom’s mental energy goes to figuring out what her child needs and how to get it. To have this process go on without me, and result in such an amazing chair….I cannot put into words what this means to me. More importantly, I cannot imagine what having some control is going to mean to Miss Abbie.

I got a huge grin from her when I mentioned, “Abbie, you are going to be able to drive before your brothers are!!!” So, consider that fair warning…if you visit Kahala Mall or the surrounding neighborhood, be on the look out for a girl in pigtails speeding by in black blur. Once she gets going, I’m not sure there will be any slowing her down….in many, many ways!

Wow, I didn’t realize it’d been so long since the last post. This summer schedule has been kicking my tail, and now we are in the midst of painting the whole interior of the house and moving rooms around — a little extra chaos is always fun.

Abbie has been doing magnificently. During PT on Monday we sat her on a chair because we wanted to work on knee bending. She was doing it so well herself, that we decided to have some fun with her arms and hands. An easel was set on a desk in front of her, upon which we sprayed globs of the foamy soap she so loves to play with. Now understanding this was her chance to make a big mess, Abbie began moving her arms toward the middle on her own, something she’s never done…back and forth she went. We would support her elbows to help with the weight of her arms, but she knew just what to do. Seeing new things makes therapy sessions fun!

On Wednesday we went to se a different therapist, who asked what we’d worked on in Monday’s session. Abbie, laying on the floor, lifted her arms and moved them toward the middle. Wow! Working against gravity AND answering a question. We were quite impressed, but that was just her opening act. Soon after, still lying on her back, she started bending her knees and lifting her legs. She’s never done it that way — she would only lift a straight leg. Right leg, left leg, right leg, left leg…we were giggling by this point. We then sat her in a chair, so she could practice good knee-bending, as well as moving her leg to kick a ball. She worked hard for a solid 30 minutes, which prompted her nurse to say, “Abbie, I don’t know what’s changed, but it’s all clicking inside you now…you know how to move your body.” Another really fun day of therapy.

We recently took Abbie to one of RJ’s allstar baseball games. It was more than a little hot that day, which I remedied by taking wet cloths in a cooler with an icepack, rotating them on her head to cool her. It’s always a hard call. We so much desire to have her with us everywhere we go, but the reality is that some places, some events are just not good for her. This trip was worth it however, before the game even started.

We were sitting under a shade tent, up a little embankment behind our boys’ dugout. I had just begun her feeding shortly before the game started, when Coach John asked if the team could come see Abbie before the game. I dumped that tube of food back into the bottle so quickly sparks may have flown. He coached the twins the summer Abbie got hurt, so the tender spot in his heart for her rivals the Pacific.

The players lined up in front of her wheel chair, and took turns giving her a high five. I spoke for her as I raised her hand…”Good luck Maka…good luck Jarrod…good luck Nohili….Noah…Eli..RJ…Austin..Kalehua..” At the end I couldn’t even say the names because I was tearing up. For her presence to be recognized — and valued — by the team overwhelmed me with gratitude. Knowing she is such a precious gift gets us through even the hardest of days, having others see it too enriches even the brightest ones.